Health Organization for Pudendal Education

That all sounds good. Keep us posted.

April

OMG, this pain has gone up so much, it just takes my breath away. My poor wife has had enough and announced this past weekend she is leaving, she has put an offer into the condo. So this has upset me tremendously as I love her and need her. But she has been through so much with me health wise. I suffered from that arthritic hip for years, couldn't walk anywhere and we finally get the hip replacement and the hope it brought for a new better life. We were so hopeful then at 5 months recovery this nerve pain started and its just been downhill.

I understand...I dont blame her for wanting to leave but if she could just wait till I get this nerve pain treated. Anyway, I am a 62 yr old grown man who has been crying like a baby this whole week and I just dont know if I cant stand it. I found this pain medicine that my doctor gave me many months ago that I didn't like so I have just started taking it with my regular 15mg 0xy pills. Its Zohydro with is time released And the Flexeril at night. I am taking 300mg of lyrica but am thinking of just increasing it on my own.

If it goes up any worse I don't know what to do. My poor butt is frozen...just keeping ice on it all the time which is not good. I am trying to just go day to day. And learned they put my appointment out from Feb 18 to March 4 for my appointment with this neuro-urologist who only sees patients on monday morning and teaches at the med school rest of week. Seems so long away.....I dont know why I am posting this but maybe someone has some suggestions for me??

Hi Robin,

That is heartbreaking to hear your wife is leaving. I find it hard to comprehend but I guess there are some people who just don't have the patience for people who are in pain. Chronic pain can change your personality and some people find that hard to deal with. I wish I had the magic answer on what you could do at this point but often there are no magic answers for this disease. It isn't always possible to get family members and spouses to understand the type of pain people with PN experience so it isn't always a safe place to vent to them. But the forum is a safe place to express what you are experiencing because many of us have been through similar symptoms before and we understand what it feels like.

The hope is that you can at least find something that will make you better. You still have some treatment options but I know that waiting for an appointment can seem like forever when you are in pain. I don't know if there is any place in your area where you could get water therapy in order to try to calm down your pain while you are waiting for other treatments. Hopefully you will find some other ideas as you read through the forum.

Violet

Thanks for your reply Violet and your thoughts. This is the worst week of my life pain wise. Just when you think you have had the worst of it,, it goes to another level. Thanks god I have this medicine. And my wife is saying she just wants her own place and closer to her work. And she has offered to continue to help me when needed. We will see. I have two daughters 21 and 22 who could possibly help but only one is in Charlotte. And two good friends have offered to take me where I need to go but they are in Florida too and I hate to ask them to come all the way up here and drive me to Baltimore. But this getting upset makes the pain worse....I need to calm myself. I have learned an important lesson with this nerve...try not get upset or I will pay for it.

Well, it's hard to stay calm when you are in pain, and you can get into a viscious cycle of pain and anxiety. So anything you can do to keep your pain levels lower while you are waiting for your appointment is important. Some of the things you can try are alternating hot/cold with heating pads and cold pack,s or sitting in alternating hot/cold water sitz baths. If you are able to increase your medications temporarily that could be helpful too. Gentle massage might be helpful too if you can find someone to do it who you trust. You can also try some topical ointments, sprays, or patches - either prescription or over-the-counter. They can include things like lidocaine, benzocaine, menthol, baclofen, ketamine, or gabapentin.

Violet

Thanks for the suggestions Violet...I increased my pain medicine with this left over bottle of medicine they gave me back in April and will stop it when this flareup is over. But I am thinking this may be the new normal, not a flare just a step up to another painful level...it just taken time to get here. I hope not, cause when this bottle of medicine runs out I am gonna really be hurting.. The pain medicine pa is very understanding and kind but she can only prescribe so much as there are DEA limits. I was on pain medicine before this pn arrived so it helps less for me as I already have tolerance to it.

I would love a nice hot bath but I cant sit in the tub, even on foam. And it hurts to squat. I spray hot water on me in the shower. I am thinking of trying the water walking at the YMCA. I have to move this leg with the new hip. I may also just pick out one of those pelvic PTs I see on the internet and go to one. I was gonna wait and let the doctor recommend one to me but now the appointment has been pushed out.

Oh, I forgot to mention that I do have a special compounded cream that contains lidocaine, baclofen, gabapentin and diclofenac. I put it on the area and it helps some, not a lot. The 5% lidocaine patches work better but I can only keep them on for 12 hrs, so when the patch is off I use this cream that was ordered from a special compounding pharmacy.

If you have developed a tolerance to opioids you might want to ask about trying buprenophine because it is a partial agonist. In switching over you might have to use suboxone temporarily. It is a combination of buprenorphine and naloxone. You can do a search on Cora's posts on the forum about it. It doesn't work for everyone but it's working very well for her and might be worth trying if there is any chance you have hyperalgesia due to developing a tolerance from long-term use of opioids. I don't know if your PA would be able or willing to prescribe it because it's kind of complicated and can sometimes be associated with drug addicts who aren't using opioids for pain but as recreational drugs. Unfortunately, they make it more difficult for the people are are truly experiencing pain. Anyway, I wish you the best as you sort through all of this. I'm sorry your appointment got rescheduled. Be strong and keep fighting. I think you will eventually find something that helps.

Violet

Unfortunately, my pain doctor runs a pill mill....I have been going there 3 years and only seen the doctor one time and it was a terrible visit. Instead you see the PA's, he has 4 of them seeing 4 patients an hours and they only have so much time and dont really diagnose conditions, they just try to write the medicine scripts that will help you. I hope I dont have that hyperalgesia but will ask the PA about it and maybe she knows about it. Is there a test for it or just diagnose from symptons?

I mostly am just tolerant to oxycodone. They switched my night medicine to ms contin and I do ok with the lowest dose tablet, it runs from 15mg to 200mg. Its just most of these opiods make me sleepy in the day so the only two that keep me awake are oxycodone and hydrocodone. They have these pamplets on buprenophine and I read about it and some patients have switched. I have just heard from clients that its much harder to stop that medicine, so I stayed away because of the long half life. But I may have to end up trying it as they are switching patients over to it because it has lower abuse potential. Maybe it would work better, does it make you sleepy??

So this Zodyra I am taking is time released hydrocodone and works ok, so may have her just switch me to this. But I have been on pain medicine on and off since 2011 when I had a failed cervical fusion so there is a tolerance there. I have gone off it several times but have gone back from pain issues, the latest being this hip problem which lead to this pn problem.

I need a better pain management doctor. When I lived in Hickory NC they had a wonderful pain clinic where they did injections and you saw the doctor, not every visit, but at least couple times a year or whenever you needed to speak to him. This place is not good. My previous PA left and told me things that make me want another clinic. But I just don't have the energy to go about trying to switch. I just hope I can get through today and this pain is already there today and the mornings used to be pretty good.

Hi Robin,

It is, as Violet said, absolutely heartbreaking to hear that your wife is leaving. I'm so sorry. Yes, you can share your problems here since we do all understand. Can you sit on a toilet seat? If so, I would try a sitz bath. I didn't try this until a couple years into my pn, and I was surprised by just how much it reduced my pain--if the water was hot enough, it was as good as ice. And I was surprised by how much it relaxed my muscles. More recently, I've been using a heating pad (plastic), and it is also good---not as good as a sitz bath but much more convenient. Given the restrictions on pain meds, you could ask the pain pa about amitriptyline. That has worked very well for me, and it helps me stay asleep. Keep us posted.

April